at the heart of it

"Oh, I would just like to go quietly. Peacefully, you know?" Her powdery round face in its wrinkled beauty purses its lips and continues its laboured exhalation. "My husband disagrees, though. He wants me to be resuscitated, and to go on a breathing machine." Her fast, irregular heart rate pings up and down on the cardiac monitor, and I envisage her soft, floppy heart, straining to pump blood into soggy lungs, and thereafter round stiff arteries. She grips the rails of the bed. The papery skin of her hands are pockmarked by the numerous attempts at trying to find a vein beneath her fluid-loaded tissue. She smiles, and looks unafraid, and I make a mental note about how her ongoing care wishes can be sold to a medical team. I marvel at her peacefulness as I ask her difficult questions, and I'm frustrated at the bartering that will need to take place to ensure that this lady receives the most appropriate level of care to meet her end of life expectations. Her blood results indicate she has not been taking some of her myriad medications, and I wonder if the wily old soul has been trying to expedite this moment, in a way which obfuscates her poor husband's responsibility. This husband who has probably lived with this gentle lady since somewhere between Marilyn Monroe marrying Joe DiMaggio, and the release of A Hard Day's Night. For him more than her, separation and loss are the darkest clouds on the horizon.

"Do you have any pain in your chest? Do you feel anxious about your breathlessness?" I do the doctor thing, simultaneously weighing up her symptoms, and trying to address what is actually bothering her at that moment in time. One thing I have learned in this job is that people present not with a clear list of symptoms, but a muddled collection of anxieties and worries and questions and complaints, sometimes among which lurks identifiable, concrete pathology doing its best to evade detection.



But at the heart of it is a lady in her ninth decade, probably taking a calculated decision to avoid most of her twelve or thirteen medications set out for her in a neat pack day-by-day, and seemingly with a penchant for avoiding any more trips to hospital to be needled and prodded and carted around in ambulances, to be told once again to go home and take her tablets. We recognise her wishes, and encourage her to discuss advanced directives with her husband, to help us facilitate her comfort and wish for quiet at this, the encroaching interminable advance of time.

I am not interested in commenting on the rights or wrongs of how we treat (over-treat, under-treat) in our lavishly rich medical systems. I am interested in one old lady and her clear-sighted wishes about her own ailing body. Individuals at the bottom and the top of our society, are also at the centre.

the gift of time

I've just spent the last week recovering from a painful operation. I want to wax lyrical about the enlightening experience of pain and the new appreciation that it gave me for my health. But it was just shitting sore. Literally. I found myself doing what I get annoyed at patients doing: being astounded that one should suffer from such a degree of pain. It seemed almost inconceivable that this level of pain could be associated with a healing process. I found myself resorting to Dr Google in the early hours of the morning when I could not sleep, and latching onto similar stories shared by anonymous others online. I felt like the surgeon had not prepared me for this; his 'you'll be sore for a few days' did not cut it when I felt like could have passed out during a purgatorial trip to the bathroom. 

But I did learn that with pain comes the gift of time. Time slows, as we observe and experience our own suffering. We wrestle with fear that this moment will not pass, or that it will get worse. In the midst of pain, there is a realization of our spectacular human frailty, and a delineating of what we are as opposed to what we think or hope or fear that we are. We may be surprised at our resilience or shocked at our fragility.  It may not be as dramatic as spending the day in bed crying, but rather a more sinister, sabotaging of our greatest attributes upon which we pride ourselves.  We see that our patience with and tolerance of others is largely dependent on our own sense of comfort and fulfillment,  not on our altruism and sacrifice. And of course we can give ourselves slack and 'room to be human' - but our humanness is emphasized,  and its capricious nature depends so much on the stability,  peace and pleasantness of its surrounding environment. This reminds me that my resilience and capacity for goodness - whether that is being kind or patient or listening or encouraging - may largely be products of the general blessedness and beauty and luxury of my cossetted life. I cannot judge others for not displaying this trait or that trait, when often I will know little of the pressure that life is exerting on them that day.

Time was also literally gifted to me. I had to take time off work, and then had to extend that further. I was not able to play with my daughter as I usually would, and my wife carried the main burden of caring for us all. I enjoyed being forced to slow down, though. Walking slower, moving slower, being forced to be aware even of how I sit. It made me mindful of what I do. This was obviously bothersome at times, but it was good too. I could feel the pain, accept it, and then adapt what I did around that, or I could focus on it and get annoyed at it and become fearful of it.

It was, ultimately, a good learning opportunity,  and a reminder that I have little right to think that I know what someone means when they are in pain. Maybe I have a little bit more of an inkling that far and beyond a physical sensation, someone's sleep, mood, ability to think  and act as they wish, may be severely impaired. And with that comes disappointment and frustration and weariness.

If you know someone who lives with some degree of chronic pain,  or any chronic illness, or someone who is having a painful procedure, remember that their 'humanity' may be being tested, and they may be struggling to deal with what they are seeing and learning about their self. This has definitely taught me some empathy, even with the people who listed their weekly progress of bowel movements on haemmorhoidectomy discussion forums.